Staten Island Advance/Tom WrobleskiAt a Brooklyn press conference, attorney Judith Grimaldi, West Brighton resident Stewart Heller, GOP Assemblywoman Nicole Malliotakis and attorney Joanne Seminara, left to right, discuss how a state budget proposal could decimate the life savings of those who care for their spouses who have Alzheimer's and other illnesses.

STATEN ISLAND, N.Y. --Sherman Heller has spent 18 years caring for his wife, Linda, who has Alzheimer's disease, in their West Brighton home.

But Heller said his life savings and his capacity to afford his wife's care are threatened by a budget proposal being pushed by Gov. Andrew Cuomo.

"The horizon is getting dark," said Heller, 75. "Everything I put together is iffy."

Cuomo has proposed removing the "spousal refusal" allowance in New York state. Spousal refusal allows seniors to separate their income and resources from those of a spouse who needs care.

If the allowance is removed, at-home caregivers would have their assets counted when it comes to qualifying for Medicaid, which could harm their eligibility and leave them without the resources to care for a loved one.

Opponents say that spousal refusal merely allows wealthier New Yorkers to protect their assets while having a spouse cared for by Medicaid at taxpayer expense.

"They could rapidly lose everything they have saved in their lifetimes," said Ms. Malliotakis, who held a press conference with Heller and others yesterday at the St. Nicholas Home for seniors in Brooklyn.

Without spousal refusal, advocates say, a couple would have to "spend down" and live on $20,850 in assets, about $1,159 per month, in order to qualify for Medicaid.

Eliminating spousal refusal would also hurt if a spouse is in a nursing home.

The Hellers have been married for 48 years and are the parents of four children. But Heller said his life now is "a delicate balance of survival."

He described the pain of "watching the love of your life literally disappear in inches, watching her deteriorate."

Linda Heller is 69 years old.

Said Heller, "It's an ever-accelerating and losing battle."

He said that spousal refusal "is the one thing that's kept me afloat, allowed me to function and have a life."

The threat of losing it, he said, "is like a guillotine hanging over my head."

"Everything I've worked for my entire life would evaporate," he said. "I dread the loss of it."

Heller said that Medicaid currently pays for his wife's 24-hour, in-home health aide, but that other costs, including expenses like hospital beds, home modification and equipment, even heat and electricity, are burdensome.

Heller said his wife does not walk or speak, "but if I get one kiss a day, that gets me through the night."

Ms. Malliotakis, a member of the Assembly Committee on Aging, said thousands of New Yorkers, including many on Staten Island, avail themselves of spousal refusal.

She said the state is looking to save about $34 million a year by eliminating spousal refusal.

But she said lawmakers should attack the estimated $5 billion in fraud and waste in the $54 billion state Medicaid system instead of looking to "raid" the assets of seniors.

"The state shouldn't attack individuals like Sherman and his family," Ms. Malliotakis said. "It's an additional problem, not a solution."

"How are people going to live?" asked Westerleigh attorney Gina-Marie Reitano. "You won't have people getting home care because they have to spend down to that $20,000 level. You're going to create poverty."

Ms. Malliotakis said that removing the allowance could lead seniors to conclude that it would be better for them to divorce or live apart from their spouses.

Ms. Malliotakis, a fiscal conservative, said that when it comes to trimming the budget, "we need to be sure of what we're cutting. Every dollar has a face."

She said that the Senate and the Assembly will present their budget proposals soon, and that she hopes spousal refusal will be included.

The governor's office has looked to cut the allowance for at least the last 18 years, she said, with the Legislature always restoring it.

"Due to the way that the health care system is set up, if spousal refusal is taken off the table, patients and their spouses have no rights," said Gladys Schweiger, executive director of the Alzheimer's Foundation of Staten Island.